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Please carefully read the following information regarding consent, and indicate below whether you agree to participate in this program.

University at Buffalo

Consent to Participate in a Research Study
Title of Protocol: Multiple Sclerosis and Vocational Accommodations
Principal Investigator: Ralph H B Benedict, PhD
Site of Investigation: The Jacobs Neurological Institute; The Buffalo General Hospital

You are being asked to participate in a research study. The purpose of this document is to provide you with information to consider in deciding whether to participate in this research study. Your consent should be made based on your understanding of the nature and risks of the treatment, device, or procedure. Please ask questions if there is anything you do not understand. Your participation is voluntary and will have no effect on the quality of your medical care if you choose not to participate.

PURPOSE OF THE RESEARCH STUDY

Multiple sclerosis (MS) is a disease that can cause/result in a variety of potentially disabling symptoms such as walking impairment, cognitive impairment, difficulty regulating body temperature, and severe fatigue. The debilitating effects on work that some of these disabling symptoms cause can potentially be improved by modifying an employee's work environment or job characteristics. The purpose of this study, which involves research, is to identify job modifications that may prolong employment.

ELIGIBILITY

You are being asked to participate because you are 18 - 70 years of age, have a clinical diagnosis of Multiple Sclerosis (MS), or are matched on demographic variables to an MS sample and you are employed in some capacity. Or, you have previously participated in this research study and have become unemployed/disabled (since you first completed this survey).

PROCEDURES

Once you are screened and deemed eligible (either in person or over the phone), you may be scheduled to come in to the Conventus center for neuropsychological testing and later asked to complete an online survey. The neuropsychological testing battery will assess your memory, visual acuity and thinking speed, and will take approximately 60 to 90 minutes to complete. You may be asked to complete the online vocational study 12 times, every three months—at months 0, 3, 6, 9, 12, 15, 18, 21, 24, 27, 30, 33 and 36. The survey will take approximately 15 minutes to complete. The research study for each subject will last for 3 years, regardless of whether you are a MS patient or Healthy Control. The survey will include questions about your current job status, job accommodations you receive, and a questionnaire about your thinking, learning and memory. You may also be asked for your feedback on the questions and information in the survey through a focus group or email, this is an entirely optional component of the study and if you choose not to provide feedback you can still participate in the rest of the study.

RISKS / DISCOMFORTS

There are no foreseeable risks, side effects, or discomfort from taking part in this research study.

BENEFITS

There is no direct benefit from participating in this study; however, your participation will provide information that may benefit others with MS.

ALTERNATIVES TO PARTICIPATION IN THE RESEARCH STUDY

Participants may decline to participate.

NEW FINDINGS

You will be told of any new findings developed during the course of the study that may relate to your willingness to continue your participation.

COST ASSOCIATED WITH THE RESEARCH STUDY

You will not be required to pay for any study procedures.

COMPENSATION FOR SUBJECT PARTICIPATION

There is no compensation associated with this study.

CONFIDENTIALITY/SECURITY

Information related to you will be treated in strict confidence to the extent provided by law. Your identity will be coded and will not be associated with any published results. Your code number and identity will be kept in a password protected file on a private computer of the Principal Investigator, your online responses will be kept on a secure computer hosted by www.vovici.com and the internet communication coded using Secure Socket Layer (SSL) encryption. In order to monitor this research study, representatives from the Health Sciences Institutional Review Board may inspect the research records, which may reveal your identity.

VOLUNTARY PARTICIPATION

Your participation in this study is voluntary (a choice made by you). You may refuse to participate or may discontinue participation at any time during the study without penalty or loss of benefits to which you are otherwise entitled. If you choose to withdraw from the study, no further information will be collected from you or about you. You should know, however, that the information collected about you up to the time of your withdrawal may continue to be used.

SPONSORSHIP

Dr. Ralph Benedict, Principal Investigator, is conducting this research study. This study has no outside sponsorship.

ELECTRONIC SIGNATURE:

All of the above has been explained to me and all of my current questions have been answered. I am encouraged to ask questions about any aspects of this research study before signing this document. If, in the future, I have questions, concerns, or complaints about the research, I should contact:

Name: Dr. Ralph Benedict
Title: Principal Investigator
Phone Number: (716) 323-0556

If I have any questions, concerns, or complaints about my rights as a research participant or want to speak to someone who is not associated with the research, I should contact the staff at the Office of the Health Sciences Institutional Review Board, University at Buffalo: (716) 888-4888.

Next
Please complete the following information about yourself.

We will never share or disclose any of your information without your specific consent, or as required by law (as described in the previous consent form).

Contact information
* Case-Sensitive!
Basic information

City State/Province Country
Education

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MS Status
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Multiple Sclerosis Neuropsychological Questionnaire

Instructions: The following questions ask about problems that you may experience. We want you to rate how often these problems occur AND how severe they are, over the last three months.
*Please respond to all 15 questions!

Very often, very disruptive Quite often, interferes w/life Occasionally, seldom a problem Very rarely, no problem Never, does not occur
  • 4
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Fatigue Severity Scale

Instructions: Below are a series of statements regarding your Fatigue. By Fatigue we mean a sense of weariness, lack of energy or total body give-out. It is different from being tired! Please read each statement and choose a number from 1 to 7, where #1 indicates you completely disagree with the statement and #7 indicates you completely agree. Please answer these questions as they apply to the past TWO WEEKS.

Completely
Disagree
Completely
Agree
  • 1
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  • 7

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Current work status

What is your current work status? (please check all that apply)

Disability benefits

Are you receiving disability benefits? (please check all that apply)

Income

$
Work problems
Have you experienced any of the following in the last 3 months due to poor performance or mistakes you made?



Accommodations
Please choose any job accommodations you are currently using/receiving:
 

    Other Accommodations:



Wrap-up